From a basic, logical perspective, XMRV as the causative agent for any disease has been dead in my eyes, for quite some time. One would literally need to bend the rules of basic epidemiology, basic cancer biology, basic immunology, basic virology, time/space for ‘XMRV’ to be ‘real’.

But of course, in the real world, especially with virology, things dont always work logically.

Long story short– They tested lots of CFS patients and lots of healthy controls for XMRV lots of different ways. They didnt find it. Thats not all that interesting anymore, because apparently no one can find except the Blessed Mikovits. Yes they used lots of detailed protocols, but again, everyone has. Im bored with smart people wasting their time on this crap. Im disgusted at the money being wasted on this crap in a funding crisis.

No, whats neat is they tested 14 of WPIs poster-child ‘positives’– people who had repeatedly tested positive in the WPIs labs for the past couple of years.

They were not XMRV positive with this labs *extraordinarily* paranoid protocols. For an example, there is no way I would do this:

We prevented this [contamination] by handling only one set of cultures in the biosafety cabinet at a time, and meticulously decontaminated the cabinet between cultures with 70% ethanol and UV irradiation. This made the viral replication assay very time-consuming and labor-intensive, and we could perform it only on a subset of our samples.

I regularly juggle 60 different viral cultures in one sitting. The hood is sterilized before and after all of them, not each of them– I physically wouldnt/couldnt do what they did and not lose my mind (they did ~70 cultures). But they took the risk of contamination so seriously they did it anyway.

What a lot of you probably dont know is that the last author on this paper, Ila Singh, has published before on XMRV. I covered her paper here on ERV, on XMRV and prostate cancer. She ‘wanted’ to find XMRV, but she (and her lab) took the risk of contamination so seriously they went to extreme measures to prevent it. Certainly if they still found XMRV in CFS vs healthy controls/negative controls, they could be more confident what they found was ‘real’… but if they didnt find anything, they would be effectively ending the saga of XMRV and CFS.

Ila Singh shot Old Yeller.

It had to be done, and she (and her lab) did it.

That is really the point I want to make in this post– Singh, Silverman, they have been taking the negative findings on XMRV in stride. If Ive said it once, Ive said it a million times on ERV: Scientists are wrong all the time. We design our experiments the best we can, we publish what we find. “YAY!” if it turns out we were on the right track. “CRAP!” if it turns out we were seeing an artifact, or we made a mistake, or we made the wrong conclusions from our data. Being ‘wrong’ in and of itself just isnt a big deal. I feel bad for Silverman, having ‘YOURE WRONG!’ pointed out by someone else. And though Singh has said things that have annoyed me in the past, I am genuinely proud of her for stepping up to the plate and shooting Old Yeller herself. Because scientists are wrong all the time, we have to be prepared to look at our own protocols and data critically, and we have to be prepared to kill an idea if it is a dead-end, no matter how much we love it. I dont know (care?) how the rest of the field views Silverman and Singhs ‘mistakes’– I respect their mature, scientifically appropriate response*.

Their responses couldnt be further from those of Judy Mikovits. She provided Singh with the ‘positive’ WPI patients, yet she is already (read: still) in ‘deny, deny, deny‘ mode:

The Whittemore Peterson Institute’s Judy Mikovits, who led the research team on the Science paper, tells the Health Blog she has not yet read the complete study. She says XMRV isn’t fully understood. And she also says that one of the statements in today’s paper is incorrect. She tells Health Blog that not all of the 14 people who previously tested positive for XMRV were part of the original Science paper; only two of them were.

Light says in response: “The 14 patients who previously tested positive were all selected by Judy.”

I have seen no evidence, anywhere, that Mikovits will *ever* back down from XMRV–>CFS/’Chronic Lyme Disease’/Autism/’Gulf War Syndrome’/anything and everything under the Sun. Her responses to every XMRV negative paper have been shocking, completely uncoupled from reality. She happily has jumped into bed with every idiot who has given her a wink, from the anti-vaxers to the snake-oil salesmen to the obviously-mentally-ill-to-even-the-most-casual-observer MD.

I am under *no* illusion that Mikovits will *ever* step up to the plate and say ‘My bad’. Would it be nice? Would it ultimately help CFS patients, what Mizz Mikovits professes to have on the top of her priority list? Of course. But I have seen no indication that she has the intellectual ability or emotional maturity to do this, and a contingent of the CFS population will not move on until she does.

I used to think that Ila Singh was “on our side”. Now she’s involved in poor testing techniques that can’t even find XMRV in WPI’s patients’ +ve samples…

This study used unvalidated methods and the results prove it could not detect the virus in two known positives…

Every marker said not to be related to the cause of CFS, I have. Medical tests confirmed, including XMRV. Let us all remember that when Polio first struck, it was called “Infantile Disease” since the medical community thought those patients weren’t really sick…

Dr Singh’s study shows that her new assays are unable to detect XMRV/HGRVs in known positives…

I was/am operating under the assumption that a new form of anti-science/medical-woo was born October 2009.

* I still have issues with Alter though. He could have helped avoid all of this if he had either a) submitted his paper to a non-PNAS journal or b) looked for integration sites like the external reviewer asked. He was part of the problem, when he could have been part of the solution. He needs to step up and acknowledge this mistake, as does PNAS.

When Judy Mikovits receieved her tiara from patients (and no,
I am not kidding), she even stated that Ila Singh needed to get a tiara too. Now Ila Sing has supposedly turned over to the dark side. Because they don’t like her results. WTF?

I love the “validation studies should use *clinical positives* for calibration” meme though. And I am proud that you haven’t quoted one of my many wacko comments from that blog…

Mary– It was the fist analogy to pop into my head. I mean, she didnt *want* to shoot Old Yeller, but it had to be done. She gritted her teeth and did it, while Mikovits is in complete denial the dog might even possibly maybe have rabies.

RRM– Yeah… I have never used a ‘clinical positive’ sample for calibration, ever. Plasmids or viruses grown off those plasmids. I mean, I do use viruses grown from patient isolates/plasmids generated from patient isolates, but not fresh draws for assays. Also, *BARF!!BAAAAAAARF!!!*

Christ, Jules… I hadnt bothered to check that out. Sad now that I did. Pissed as ever at Mikovits irresponsible behavior the past two years.

Jon– Those were comments copy/pasted from the WSJ article. You can find worse insanity from people who insist they are NOT INSANE at the place Jules referred to.

This is *distressing*. One positive CFS patients can get out of this fiasco is that it raised awareness about their illness. But Im afraid its not in a good way– I have gotten so many nice, supportive emails from CFS patients and their families for being frank and critical. Short notes. Or one comment, ever. I have to *fight* to remember them when I see train wrecks like that forum. It is *distressing* to see people who clearly have psychological issues fight so violently against addressing them. Its *distressing* that they have all the energy in the world to obsessively support their medical anxieties and fixations and angrily fulfill vendettas with floods of hatemail (theyre doing it to Singh now, apparently) and background searches on everyone on papers they dont ‘like’ and journalists who dont cover the topic ‘properly’, leaving dozens of comments on message boards a day (while the rest of us are working)… while people with CFS can leave a comment on a blog, once.

when Polio first struck, it was called “Infantile Disease” since the medical community thought those patients weren’t really sick

Meanwhile in the real world, polio “was later called infantile paralysis, based on its propensity to affect children.”

It is nice of Mikovits to say stupid things that can be instantly recognised as stupid even without knowledge of virology, rather than restricting her displays so they can only entertain experts in the field.

What is interesting about this study is it seems to be the one that is changing the most opinions of CFS patients and advocates.
Many patients and advocates (myself included) are now accepting that while XMRV seemed to be an exciting and worthwhile hypothesis initially, it has ultimately turned out to be false.

Oh and that forum that was mentioned in a previous comment is actually an offshoot for those who wished to be sheltered of criticism and is not representative of patient opinion in general.

I am here to vouch for the majority of CFS patients out their; we no longer believe XMRV plays any role what so ever in CFS. That is coming from someone who tested positive for XMRV from WPI’s lab over a year ago.

The online forums for CFS patients are filled with crazies hell bent on a belief they hold so dear, that XMRV causes CFS, that no amount of information will change their belief.

To those reading this post or seeing the crazy statements from patients in the comment sections on articles about XMRV. Please do not judge millions of patients (CDC estimated over a million in the US alone) from the statements of a small vocal minority of a few thousand extreme CFS patients.

The basic problem here is people with CFS have very few places to turn for help for there real physical disease. There are only a handful of specialist in the US for millions of patients. When people are left to there own devices for a disease that has derailed their life some are willing to accept any hypnosis or treatment that sounds plausible to them out of desperation.

Racaniello was one of Judy’s collaborators on the Science study. This quote from his blog is from an article about the Singh study. I think that it means that he accepts the science (but non-scientists probably won’t) ie he gives up.

“I believe that it is important to determine the source of XMRV in samples that have been previously tested positive for viral nucleic acid or antibodies. Without this information, questions about the involvement of XMRV in CFS will continue to linger in the minds of many non-scientists.”

LJ– I dont suppose you have all the paperwork you had to fill out/you received for your ‘testing’? I cannot test anyone for HIV-1 in my lab– testing for ‘research purposes’ and ‘clinical purposes’ are two very different things. And, if you are using patients for ‘research purposes’, you pay them, or they volunteer. They dont pay a dime. I am interested in how WPI is avoiding censure by the FDA for their ‘testing services’ (or whether the FDA just have not investigated).

I’m glad to see the comments on this post are more rational than the shitstorm that descended on Vincent’s blog the other day.

As for the WPI/VIPDx testing service, if you dig around you’ll see that they are indeed a CLIA-licensed clinical laboratory covered by Nevada and Federal law (Harvey Whittemore is a lawyer, after all, so they’re not going to leave their asses hanging out completely bare). Under CLIA, any licensed lab can develop its own “homebrew” test and market it with relatively little oversight. In other words, the FDA probably can’t do anything about their testing service at this point.

The recently launched WPI treatment program is a horse of a different color. They’ll be treating patients by prescribing toxic antiretrovirals off-label, for a virus they might not even kill in vivo, which hasn’t been shown to cause any disease. If any of those patients have any kind of problem with the treatment, there’s a nasty legal term for that – starts with “mal,” ends with “practice.”

Alan– There is obviously a segment of the ‘CFS’ population that is mentally unbalanced. I think Ive made it clear to that population that I will not provide them with a venue to fester and fixate on their health anxiety. Asking questions is super, and highly encouraged– leaving insane/aggressive comments like those on Virology blog are not acceptable. I dont know why Vincent puts up with it.

Re FDA: Damn. I think the FDA can still intervene when they feel it is appropriate. CLIA is not a carte blanche. And I am also concerned about their ‘treatment’ trials. If they dont do everything just right, WPI is connected to the University of Nevada system. If the WPI does anything out-of-line, its not just malpractice for the MDs. The government could shut down all human trials in the University of Nevada system. I would be freaking out if I were a professor/admin in UN.

ERV, I paid out of pocket for the XMRV test from WPI’s VIPdx. I was not a patient in a study. As Alan said above there are many small labs doing there own specialty testing with little to no oversight so I do not think they are breaking any rules other then possibly a few ethical ones.

The interesting thing about the VIPdx XMRV test is the positive result percentages seen in surveys on the patient forums. If you look at the test results form CFS patients on the antibody test 34 out of 57 people reporting tested positive (60%). The culture test 34 out of 72 test positive (47%).

I know this does not mean a whole lot outside of a blinded peer reviewed publication and needs healthy controls. There test is finding something and it is obviously not XMRV. Who knows, the specificity could be so bad that they are just picking up garbage. I was a electrical engineer before I got sick with CFS so I have enough of a science background to understand some of this but I am obviously no where near the understanding level the virologist posting here.

The WPI is so invested in there position that I do not see how they can admit they are wrong. Dr. Mikovits personality type is not one of someone who will come out and say she is wrong. That is what I see as a huge problem, you have a lot of desperate CFS patients clinging to ever word she says. As long as she continues to attack every piece of evidence that goes against her data so will some patients. But please understand the majority of patients are not like this, most are too weak to even have their voices heard and are just as frustrated with the WPI as the scientist are.

LJ, my guess is that the WPI test is considered a LDT (laboratory developed test) by FDA, which generally means little or no regulation is involved unless the lab makes significant claims about the results of the test. There will be CLIA and probably Nevada state requirements on the facility and how the test is performed. Reimbursement is a completely different issue, many of these LDT tests, including lots of the newer genetic-based “risk factor” tests are self-pay, at least initially.

As I said, FDA pays much more attention when the lab involved starts making specific or significant recommendations for medical care based on the results of the LDT. Ie, if the result report on a positive test states something like you may be infected with a newly id’ed retrovirus, which may in turn be the cause of your CFS, so go see your doctor, that’s very likely to be ok. But if the result says you have xmrv and you should start taking anti-viral meds for this, that would draw intense FDA scrutiny. Best of luck to you.

I seriously doubt there will be any clinical trials. Clinical trials require approval by an IRB, and nobody outside the WPI’s reality-distortion field is going to sign off on that at this point. I think the plan is to just start treating patients. Hopefully UN has built enough legal safety valves into its agreement that they’ll be able to avoid the inevitable fallout – maybe they have some kind of “what happens at the WPI stays at the WPI” clause.

“Alan– There is obviously a segment of the ‘CFS’ population that is mentally unbalanced.”

ERV, I think you’re being really unfair here. There is a segment of ANY population that is mentally unbalanced, and I don’t even think a lot of the people you’re referring to would accurately even be described as unbalanced. Deluded? Quite possibly. Overly trusting? Quite possibly. But even these individuals only number in the several dozens to a couple hundred or so from what I’ve seen, as opposed to even the ‘few thousand’ a poster mentioned above. Most all of the comments you’re talking about literally come from a few dozen people. I’m saying this because I’ve been following this whole XMRV thing since before it began (Judy let slip back in 2008 on a local Nevada news program that the WPI was working on isolating a ‘new virus’). Even if it were a few hundred or even a few thousand the concept still applies. Few dozen and/or few hundred divided by several million = a remarkably small percentage.

As for CFS patients being ‘well enough’ to post on message boards, I can tell you from experience that when you’re housebound there’s really not a whole lot to do. Sit in front of the computer, sit in front of the tv or sit and stare out a window. I’m pretty much too sick to even ride in a car. When I go to the local church thrift store once every couple months my arms are sore for days from picking hangers up off the rack to look at clothes. I actually went last Tuesday night for the first time in a while and I still haven’t recovered as of today, Friday. I’m too sick to even have a freaking hobby like stained glass which I used to do and which I have so many ideas for the prettiest things or even sewing.

Combine all this with the intimate knowledge that a sizable percentage of the world’s medical, research, government and educational establishments (and even lots of patients’ own families) think that you’re either a) just faking, b) neurotic, c) a hypochondriac, d) depressed but not willing to admit it or e) all of the above, as well as there being an exceedingly small amount of biomedical research taking place into your condition, with literally 0 government funded biomedical research taking place in the UK (a fact which is the rule rather than the exception for much of the world), and you see how well you cope.

The lead author of the contested Science paper, retrovirologist Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada, isn’t persuaded by the Singh group’s inability to detect XMRV in anyone. “I was astounded when I leaned that Ila [Singh] didn’t find it,” says Mikovits. “These are good scientists.”
Mikovits says she remains confident that the 14 CFS patients she selected for Singh’s group have XMRV in their bodies. “These people are infected,” says Mikovits. “This study says nothing. We have complete confidence in every bit of the results in the Science paper. We don’t think any of it is wrong. There is no evidence of contamination in our lab, and we have controlled for that all along.”

Late last year virologist Ian Lipkin was asked by National Institute of Allergy and Infectious Diseases head Anthony Fauci to coordinate a multi-center study of CFS patients. Newly drawn blood samples from 100 CFS patients and 100 healthy controls from around the US will be blinded and sent to three groups – FDA, CDC and the Whittemore Peterson Institute – and assayed for the presence of XMRV. After the recent publication by Ila Singh on XMRV in CFS patients, Dr. Lipkin sent me the following note:

Dear Vince-

We have a plethora of explanations for how CFS/XMRV/MLV studies could go awry. However, we don’t have evidence that they have. Absent an appropriately powered study representing blinded analyses by Mikovitz and Lo/Alter of samples from well characterized subjects using their reagents, protocols and people, all we have is more confusion.

I came here to post the very response ERV posted @ 27. I have been absolutely gobsmacked by Singh’s demonization by so many in the CFS community. One commenter said “I thought she was on OUR side.” That alone nicely illustrates the problem with the more rabid members of our community. It’s XMRV vs. “incompetent” researchers to them. I thought it was all of us vs. CFS.

I’m sure there will be some continued research in this area but it’s definitely time to move on. (What about that research showing common proteins in patients’ CSF?) This study answered every criticism levied at previous “negative” studies, and Mikovits’s professional, scientific response has now been reduced to “I’m right and you’re wrong times infinity”? How embarrassing.

This isn’t science anymore, it’s dogma. And now I hate identifying myself as a CFS patient because of the deservedly unpleasant reputation of that certain portion of patients who behave like the assholes who still believe in Wakefield. Alan @ 26 says “Most all of the comments you’re talking about literally come from a few dozen people….Even if it were a few hundred or even a few thousand the concept still applies. Few dozen and/or few hundred divided by several million = a remarkably small percentage.”

Irrelevant when those are the loudest, least reasonable, and most intractable voices that are heard. Quibbling over how many people behave obnoxiously is pointless when that obnoxious behavior gets FAR more attention than reasoned, scientific commentary. I’m grateful for journalists like Trine Tsouderos of the Chicago Tribune and Amy Dockser-Wallace at the WSJ for being calm, rational, and science-based in their reporting on XMRV.

I am a ‘sufferer’ and have always followed this blog, but never commented. Just wanted to say thanks for helping me try and maintain some balance over all of this.

Boy, has it really been rocking since 2008? Phew. I do have a question, if I may?

Many of the more vocal supporters of the ‘link’ between ‘XMRV’ and ‘CFS’ (who lets’ face it have probably received a ‘positive’ from Vip.dx and/or WPI et al. – so I can kinda empathise with their dogged belief – kinda); have repeatedly called for a ‘replication’ of the original Lombardi et al. study, and/or Lo et al.

Just was wondering whether (and if not why not) this was ‘standard practice’ when trying to independently verify the existence of a ‘new’ virus/retrovirus?

Oh. And Trine has blogged too. I think you guys like her style and I admit I do too – it is interesting to read the additional comments coming out of the lead players in all of this, no?

‘Dr. Lipkin is not saying that the Singh study is ‘worthless’ – he is merely stating that no number of studies will convince non-scientists that the Mikovits study was incorrect. He is saying that it is up to Mikovits and Alter to repeat their studies in an appropriately powered manner to resolve the issue. I’m not sure that will happen. As I’ve said before, the Singh study is extremely well done in all ways. For scientists, there is no confusion about the findings.’

Jemal: I also think the questions asked of Singh and her replies actually do more to reinforce her latest research than reinforce the belief in any ‘XMRV’-‘CFS’ ‘link’.http://www.cfscentral.com/

I am no ‘scientist’ or ‘medical professional’ and can’t claim even to be a ‘pseudo-scientist’ and so the specifics of the Q&A’s I shall leave to others better qualified.

However, explaining how some of the wording in the published research document was not correct, does more for her credit than it does diminish it. At least her and Vincent – for example – do address errors and omissions and not press on regardless…

Yes, that interview reinforces her latest research, I agree. I am not here to prove XMRV is linked with CFS. I did want to drop in and say XMRV as a virus and causative agent for disease doesn’t seem to have completely died. That’s what I meant when she shot Old Yeller, but only in the foot.

It’s crazy to accuse researchers of not being on your side just because they find results you don’t like. The self-proclaimed king of retrovirology, Gerwyn, continues to spread is bile on that forum and on the internet. That forum just exudes crazy crazy crazy.

You would think there would be celebration that XMRV is not the cause of ME/CFS. Who in their right mind would actually want to be infected with a retrovirus. Lack of proof regarding XMRV does not translate into ME/CFS being a psychological illness. Time to move on, maybe it’s just a case of the immune system behaving abnormally to the presence of common viruses the rest of the population can overcome. Who knows? But wasting money here, takes research dollars away from looking for the true cause.

Once again, thank you, ERV, for addressing this directly. You have explained in a past blog post how kooks become kooks. I am wondering if you can also explain why, of all the scientists who are blogging or speaking to the media about XMRV and CFS, you are the only one calling a kook a kook? Is there an actual reason, like scientists need to be sure and have evidence? Are they more averse to the possibility of incorrectly identifying a non-quack as a quack than to not identifying a quack as a quack?

Does anyone know if WPI or an affiliate “is, or has been, under any investigation for fraud, misconduct (financial or otherwise) or other criminal activity”?

Is there an actual reason, like scientists need to be sure and have evidence?

One factor is that as a rule you don’t address the authors directly, as such, but address the substance (or not) of what they present. (Aside from risking “lowering the tone”, etc., you run the risk of being seen to be attacking the person rather than the subject matter at hand.)

The other thing is that there are coded references that say pretty much the same thing in ever-so-subtly-implied ways

(I’m not sure just saying ‘kook’ alone is quite the thing going on here, but pointing at what position the person holds and why. Put it this way: characterised by the evidence of what they do, rather than name-calling alone.)

Jack– I have hundreds of sets of primers to HIV-1 for PCR and reverse transcription (or, primer-probe sets for Real-Time). I can (and do) make design more, depending on what I want to do. I have hundreds of antibodies to HIV-1. I can make more if I need an antibody that does something specifically that I need.

The idea that there is only *one* set of primers that ‘works’, or *one* antibody that ‘works’, and only *one* protocol that ‘works’ is beyond ‘Thats a quirky protocol…’ and well into ‘Then you are seeing an artifact’.

When you describe something new, you have to tell people everything. Exactly how you did every little thing. But they shouldnt have to follow what you did *exactly*– they should be able to say “Okay, this is exactly how they did it first. If theyre right, then we should be able to do X, Y, and Z, even though they didnt do X, Y, Z”. When they can, then that says great things about what you did. If they cant, it might be them, or it might be you. If dozens of labs cant, then it weighs heavily towards something you did initially was wrong, not that everyone else is wrong but you.

Scientists build on each others work. They take someone elses findings, and do more. They dont sit in labs doing each others experiments over and over.

Anonymouse– Ive seen a wide range of responses from ‘positives’– from suicidal posts (if a family member committed suicide after getting an XMRV+ test, bet your ass Id have Judy in a civil suit right now) to jubilation (wanting to rub the results in the face of previous physicians, people who ‘didnt believe them’). One thing I have mentioned before, ERV the Unoffendable, is offended by the *extreme* anti-psychology/psychiatry of some CFS patients. Depression, anxiety, OCD, health anxiety, body dysmorphia– they are all very real diseases that patients *can* treat and overcome. As I stated upstream, some of these people *obviously* are not mentally well, but their self-induced stigma against mental illness is causing them to *violently* object to treatment. Its not an ‘either/or’ scenareo here. Its not like youre either “biologically sick and not ‘crazy'” or “not biologically sick and ‘crazy'”. A person who has lung cancer or the flu or a broken arm isnt magically protected from mental illness, people with mental illnesses are not protected from ‘physical’ diseases.

The ‘CFS IS REAL IM NOT CRAZY!!!’ meme is an excuse for people with mental illnesses not to get the treatment they need, and ironically, it is a meme encouraged by members of the CFS community.

This does not amuse me.

Smurfette– Like Grant said– there have been a lot of ‘coded references’ in the negative papers published. A normal person reading these papers might not think anything of it, but to a scientist its like ‘OH SNAP! LOL!!!’ I also think Trine has been doing a good job of stating things how they are– trying to give Average Joes/Janes the info they need to conclude Mikovits is off her rocker, without directly saying ‘Mikovits is off her rocker’.

I would also say that my blog is more of a personal extension of myself, not a professional extension. It is my personal opinion, based on Mikovits involvement with woo and her bizarre statements, that she is a kook. But shes not at an Andrew Wakefield level here (yet…), so it might not be something other scientists want to allude to (yet…).

And, I would say that since Mikovits is female, other scientist bloggers (male) are uncomfortable calling Mikovits out, for fear they will be accused of being sexist. Female wooers absolutely use this to their advantage (see: Rebecca Culshaw), hiding behind their boobs when someone aggressively criticizes their actions. As a female, I have the luxury of confronting female wooers a way some male scientists cannot. BTW– While we are on this topic, still waiting for the evidence that Erlwein et al committed fraud/bribery/lied/etc from Mikovits.

I think uncensored/unmoderated discussions like the one on virology.ws are a good thing, at least every now and then.
It is good to know what other people/patients think about a topic, even to the point of delusion. One can only hope that some patients will gain some insight from those discussions. The core of die-hard believers will not change their minds no matter what. For them the 2009 Science publication is the golden standard, everything that came afterward and contradicts the original findings, is blasphemy. It is sad to see part of the patients going the way of anti-vaccine movement or even creationists (as in believing that the WPI study is written in stone). It confirmed my fear that regardless of the outcome of future studies (for example negative studies by the bloodworkgroup and Lipkin, or even WPI failing to reproduce their findings) XMRV is here to stay, even if only in the minds of some patients. As a patient I cherish weekly chats with fellow patients so that I am reminded that common sense is not uncommon.

re ERVs: “One thing I have mentioned before, ERV the Unoffendable, is offended by the *extreme* anti-psychology/psychiatry of some CFS patients. Depression, anxiety, OCD, health anxiety, body dysmorphia– they are all very real diseases”

Yeah… but the first thing you wrote about CFS, the thing that started off some CFS patients attacking you was:

“I was gonna write about it tonight– the XMRV CFS paper is pretty dang good. And frankly, I didnt believe in CFS when I started reading it.”

When people only start to believe in CFS following a paper linking it to a retrovirus, it’s understandable for patients to see that as a kind of validation. The other psychological conditions you mentioned all (to varying degrees) have positively identifiable manifestations, whereas CFS is just a diagnosis of exclusion – being treated as if one is psychologically ill because the cause of one’s illness is unknown is quite different to being treated as psychologically ill following the positive identification of unreasonable and damaging beliefs – it’s not surprising that many CFS patients will be instinctively hostile to psychiatry if they’ve been treated poorly in this way.

re John’s: “There is a segment of ANY population that is mentally unbalanced, and I don’t even think a lot of the people you’re referring to would accurately even be described as unbalanced.”

One of the dangers of the psychosocial approach to CFS is that it encourages people to pathologise the unreasonable beliefs of patients in a way that would not be acceptable were it applied to Conservatives, Muslims or Arabs.

re Mikovits: “These are good scientists.”

She really doesn’t seem to understand the position she and her work are in.

re XMRV: I had assumed that the evidence of contamination was pretty overwhelming… but I read that a new Switzer paper found XMRV in two cases of PC (a very low rate) and that these sequences didn’t look like contamination. Could it be that XMRV is a circulating human retrovirus, but that most of the positive papers so far have been the result of contamination? That we’re really still at square one on XMRV? What was that paper from about a year ago, that found XMRV at a really low rate in blood donors? ERV said it was a good big pharma paper, or something similar.

I thought you would all like to read the latest comments about the Singh studyfrom the WPI’s clinical director, Jamie Deckoff-Jones:

“It hurts more because [Singh] seemed to be our friend. I met her in Reno last August. She was very excited by our responses to antiretrovirals, chosen because of her in vitro drug testing paper. Interesting that she was able to find XMRV in human tissue when she was studying prostate cancer in 2009 (“XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors.” Schlaberg/Singh). Odd that she so recently applied for a broad patent with respect to the virus. Then she stabs the WPI, a collaborator, in the back. Very peculiar behavior. My best guess? Follow the money.”

No more words necessary. This is now getting very silly. I don’t understand her ‘argument’ at all – partly because I am not scientifically-savy enough apparently – but also because the mantra is getting annoying now.

How many times does she expect scientists to have to justify themselves in order to placate her personal belief? This MD is taking ARV medications and, I understand, so is her daughter.

Was she likely to react in any other way to Singh’s research? No. Not as she – and others – seem to have lost their objectivity and reason.

Jack– Weve covered Deckoff-Jones here at ERV before. She is a dangerous nut. I would feel sorry for her, as she really is just a patient really excited about XMRV as any other patient, but she is using her education and position to influence other patients in a dangerous, increasingly paranoid manner. No hugs for dangerous kooks.

ERV said “Jack– Weve covered Deckoff-Jones here at ERV before. She is a dangerous nut. I would feel sorry for her, as she really is just a patient really excited about XMRV as any other patient, but she is using her education and position to influence other patients in a dangerous, increasingly paranoid manner. No hugs for dangerous kooks.”

+1

Isn’t there some medical directive that prevents doctors from influencing patients re: taking medications with a high side-effect profile for an infection that may not exist at all in the patient. Especially, when said doctor is the medical director of the institute that is directly associated with the tests that supposedly discovers this virus (and if they don’t find it the first time, they will keep testing you until they do).

I concur with the sentiments expressed. It remains sad and now even more dangerous (as anonymouse has said), that an MD and WPI Clinical Director can hide behind the disclaimer at the top of her blog.

You might have guessed I am British (apologies :)), and this would not be tolerated over here in this backwater.

Oh for sure we have our examples of dangerous nutjobs too – one that ERV refers to springs most immediately (though I won’t mention his name or Autism(for fear that dark forces may take me in the night).

Dr Jamie though is – in my humble British opinion – in need of censure, period (as you guys like to say I believe). This debarcle would be raised in our Parliament by now I feel sure.

There is actually an interesting comment on that wacko blog. One patient mailed both Singh and Mikovits and got replies from both(it seems they’re not made up):

“This is an email response I received from Dr Singh, after questioning whether she would be sending back the 25 “positive” and “negative” samples received from the WPI, back to the WPI, blinded, in order to be retested:

“We have already sent unfrozen aliquots from the 25 individuals that were identified by the WPI, to the WPI for their analysis. We have added a few of our own samples to this set. All have been recoded again. We will see what happens. But as you know, we did not find any XMRV in these 25 samples using our techniques, or those of the WPI. I don’t think a more thorough study could be designed or performed. I think the CFS community needs to move on – make their voice heard that finding a cause is important.”

I forwarded this email to Dr Mikovits and this was her reply:

“Dr Singh did indeed send samples to the WPI..two days after the paper was published. We received them late last week and do intend to test themSadly she ignored repeated requests by me and Dr Ruscetti to reconcile methodological differences when we learned of her data on April 18th. It is not at all in the spirit of learning the truth to have published these data without trying to reconcile first. I do know that you understand we will in good faith test these samples and while I would like to say that I trust these samples were not in any way tampered with but represent samples aliquoted at the time of receipt that were never opened or thawed in her laboratory. I will confirm those fact before testing. We will certainly report any results we get. There no data to say that there is contamination in any WPI laboratory. You understand a patient is not “contaminated” when we have isolated virus on multiple occasions ..these are not sequences but virions ..actual virus! That is NOT a contaminant. Of course, I understand your doubts why would anyone believe Frank and Sandy Ruscetti and the WPI over the rest of the world? Fair..but know there are others out there who are getting positive results in their patient populations and they have no doubt even with this latest study.” ”

Given the above, it wouldn’t suprise me when WPI will also find 0/0. But I’ll admit it’s just a hunch.

I do know that you understand we will in good faith test these samples and while I would like to say that I trust these samples were not in any way tampered with but represent samples aliquoted at the time of receipt that were never opened or thawed in her laboratory.

Gotta love how she rationalizes ahead of time why she may not have the same results for the samples that she supposedly did the first time around.

“Gotta love how she rationalizes ahead of time why she may not have the same results for the samples that she supposedly did the first time around.”

Bingo. But the knive cuts both ways: not having the same results will also “invalidate” the Singh study, at least in the eyes of Gerwyn et al., as that will “prove” that Singh did something wrong during collecting/handling of those samples.

She wont do them. If she does, she will not report their findings, or lie. Dont you all remember the Netherlands group? They sent Mikovits CFS patients and Healthy Controls, and Mikovits happily went to the press saying ‘They found XMRV in the Netherlands group samples!’, when in reality, they found more ‘XMRV’ in the controls than in the CFS patients?

Shes played this game before. The same damn shit. I am so sick of that bitch.

GQ497343 isnt new– it was submitted in 2009, and is almost 100% identical to 22Rv1 consensus and VP22. 3 differences in 8000 nt (22Rv1) or 5 differences (VP62) could easily be Taq error. It is in no way ‘clearly distinct’ from 22Rv1 and VP62. On no planet, in no dimension, is GQ497343 ‘clearly distinct’ from 22Rv1.

Hit #1 is the sequence you just BLASTed
#2 is the 22Rv1 consensus
#3 is VP62
#4 is ‘clone WPI-1106′ from, I assume, a ‘totally different patient’ from the WPI. Clone 1106 and 1178 are the same fucking thing. ITS. THE SAME. THING.

“GQ497343 isnt new– it was submitted in 2009, and is almost 100% identical to 22Rv1 consensus and VP22. 3 differences in 8000 nt (22Rv1) or 5 differences (VP62) could easily be Taq error. It is in no way ‘clearly distinct’ from 22Rv1 and VP62. On no planet, in no dimension, is GQ497343 ‘clearly distinct’ from 22Rv1.”

Thanks for explaining.
Perhaps – with the help of the provided tutorial – Gerwyn and Friends could suspend their Singh-binning for a moment and chew on that.

ERV, I do not think the WPI is intentionally lying, I think they are just incompetent. When I watch Mikovits talk I feel she really believes what she is presenting but I can not stand her demeanor. The attacking other scientists instead of their data and inability to keep calm and collected in a debate is really annoying to me. I view this as arrogance, incompetence, and not intentionally misleading patients. Either way it is not good.

The initial science study the WPI did in 2009 was great for bringing attention to CFS. Now I wish they would realize they screwed up, admit it, and make a active effort to try and bring things down a notch. My worry as a CFS patient is they are just going to drive researchers away from studying CFS or piss them off so much that they now do not want to touch CFS.

(I’m not sure just saying ‘kook’ alone is quite the thing going on here, but pointing at what position the person holds and why. Put it this way: characterised by the evidence of what they do, rather than name-calling alone.)

Yeah, that is what I meant when I said calling out a kook. It was just shorter to write. For example, ERV’s blog is helpful because it keeps track of who said what, who did what, what such-and-such lab thing means, which makes it easier to see who is lying and contorting.

Interesting about the coded references in the literature. I wonder though if it has to be coded to keep the tone respectful. They don’t seem exactly the same to me. Coded seems to mean that some people get the message and some people don’t, while keeping the tone should be understood by everyone. While there is a segment of the CFS population that will never be reached, there is a segment that benefits from getting the communication and is looking for it. But anyway, I was originally referring to lay media such as scientists’ blogs and quotes in the news. I don’t think a layperson can get much out of a virology paper.

It’s really wrong to cling to the belief that xmrv MUST be the causative for CFS, but it’s also wrong to say “Now that it’s proven that xmrv is not related to CFS you all have to realize that it MUST be psychological.”

I have nothing against psychological therapy. I did work enthusiastically with the therapists and I took the prescribed meds. I WAS hoping for psychological therapy to help me with my severe lack of energy. But really it didn’t help me at all.

Interesting resume of history so far – or rather an interpretation of it – and while coincidental – it might fit with what you are saying Stephen – maybe.

In reply Stephen – if I may – I think you have been persuaded to think too much could be acheived from psychotherapy, and yes, even physio-techniques like the dreaded Graded Exercise Therapy.
My own experience has, on occasion been similar. Get a ‘bad’ practioner and they try to convince you they have the answer – and if you don’t achieve the benefits their sales pitch implied – well you aren’t trying hard enough and it ain’t their fault.
Simple answer – though difficult to achieve in practice when desperate and suffering – is to laugh in their face and walk away.
No-one is saying ‘our illness’ is not real or physically and mentally incapacitating. These approaches are there to help us learn to manage and live with it – not to ‘fix’ it. And they won’t even help all of the time.
The exact same thing can be said for similar approaches used with equally real long-term conditions…

thank you for your reply.
I agree with you, but unfortunately it’s not so easy for everyone to “laugh in their face and walk away”. Especially when you have had CFS for a long time your self esteem is very likely to be low.
The problem here in Germany is, that health care on the one hand is very good, but on the other hand CFS is seen as a psychological illness. But to receive financial benefits of your health insurance you have to prove them that you are willing to “work on your illness”.
The good thing is, that I didn’t have to pay for nearly six months of clinical treatment. The bad thing is that the treatment nearly destroyed me.

My excessive need of sleep during daytime was immediately interpreted as a “retreat strategy” of a depressive person. I told them that wasn’t true but they didn’t believe me. So I was forced to stay out of bed during daytime for about two weeks. I was devastated after that and THEN even the psychologists could see they were wrong. But it was too late. I have never recovered from these two weeks and the funny thing is that I actually got depression because of this.

I wish I had shown more self esteem and said “I can’t stay up during daytime, this will make me more ill”. But having been ill for a long time, not able to work, not able to workout anymore…well of course my self esteem was low.

Back to xmrv and the WPI: They might be totally wrong. I understand that. But after my clinical treatment I really have to say: Anything that is being done to research the physical side of CFS rather than the psychological side is precious because it helps us patients stand up and say: “You can’t say it’s only psychological because science doesn’t know yet.”

What I absolutely don’t understand, is that so many patients test for xmrv. It’s just too early to do that. Even the most excited person on earth has to understand that the correlation between xmrv and CFS just isn’t proven yet.

All I am trying to say is, that even if the WPI is absolutely wrong with xmrv, it helps people to think of CFS as a physical disease instead of a psychological.

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